This one is about: Q&A Chat with Dr Canady and Dr Karnell, 5/5/2000

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Session Start: Fri May 05 14:56:42 2000

Joanne: You can go ahead and do your legal thing and we will start.

JWC:  OK, here's the legal thing...

JWC:  Both Dr. Karnell and I are here to provide an educational forum on topics with which we have expertise.  We are not able to answer patient specific questions because we cannot do a physical exam and that would be necessary to give a valid opinion.

JWC:  Neither of us are practicing medicine or surgery during the course of this forum.  We would recommend that if you have specific questions you should contact the health care providers on your local team.  If you cannot locate a team or you cannot get the answers you desired, we would be happy to see you in our clinic at the University of Iowa. You may make an appointment by calling 319-356-2168.

Joanne: Okay, Renee you can ask your question now.

Renee: My 8 month old had his lip surgery approx. 5 weeks ago. The speech therapist in his early intervention class wants to start "massaging" the upper part of his lip.  Is this ok?

JWC: Many people feel that massaging a healing wound helps the collagen in the wound to compact faster than it would if nothing else was done and this advice is commonly given. The biology of the healing wound is that it is still gaining strength rapidly until about 6 weeks after the repair, so I usually tell people to wait at least until 6 weeks.

Renee: Thank-you.

JWC:  You're welcome.

Joanne: I have a question for Dr. K.

Joanne: My daughter is ten.  She has been diagnosed as apraxic. She has no functional speech, and her fine motor is affected. Therefore, signing is a problem too.  What I want to know is two things...

1) Given that she is not talking at ten, and getting the PROPER therapy for her is difficult... (I do some motor stimulation at home with her). What sort of future are we looking at? and 2) What are her other options, should speech be impossible? She is mentally testing on a normal range.

MikeK: Given her age, perhaps her more complete diagnosis is developmental apraxia of speech.  It's a very difficult, frustrating problem.  I guess I don't have to tell you that.

Joanne: Yes... it is very difficult for all of us.

MikeK: I'm not an expert with DAS (developmental apraxia of speech) so I'm reluctant to hazard much of a guess. But I can say that at age 10, with a normal IQ, your daughter should be trying an augmentative communication system. Have you tried that at all?

Joanne: To get the system she needs, we have to come up with $5,000...we don't have it.... that would be a Dynavox system. (more)

MikeK: Ouch!  That's a bit steep.  I would think there's something more affordable.

Joanne: We also have used communication cards... but she is very able to communicate already.. just unable to speak... she gets her point across without language... so she finds the cards more difficult to use than her personal methods. I also have been teaching her keyboard skills in the hope that she will someday communicate that way...

MikeK: If you were able to get to Iowa City, I'd suggest your daughter visit our hospital school where there is an augmentative communication lab. There's a very good one at the Rehabilitation Hospital of Chicago, also. Sounds like you're moving in the right direction with the keyboard skills. Does she like that?

Joanne: Very much.

MikeK: Great.  That opens up a pretty wide range of possibilities.

Joanne: It's very hard to convince the school that she needs oral motor stimulation rather than traditional speech therapy and at this point, I wonder how far even that will take her.

MikeK: Are the speech folks at school still working toward oral speech?

Joanne: I think I have overwhelmed them with this child, to be honest with you... they don't even know how to test her.

MikeK: Uh-oh.  I know how that goes.

Joanne: None of us really want to give up on oral communication, but then there is a point where reality has to step in.

MikeK: Usually by age 10, with no functional speech, the goal is communication via whatever means works.

Joanne: Thank you. That is my opinion too.

MikeK: Technology is changing so rapidly, it's impossible for most of us to keep up with the range of possibilities. That's why it's so important to find a lab where that's all they do.

Joanne: I know there is no easy answer for this.. apraxia is exceptionally frustrating.. but my little girl who speaks so eloquently with an eyebrow and a grunt. I just wonder how much she would be able to say if she had a really functional way to speak.

MikeK: If you let me know where you're located, I could do some digging to try to find someone nearby who might be a bit more helpful.

Joanne: Thank you, Dr. I appreciate what you have to say. Iowa City and Chicago are a bit far for me. I live in California.. not far from San Francisco. Stockton, actually.

Joanne: I do have another question - this one for Dr. C.

Joanne: One of our CT members went to clinic. Her son is (I think) three.. bilateral cleft lip and palate.. both repaired, and a fistula repaired. At the clinic, the doctors mentioned a "bucal" surgery. Do you know what he may have been talking about?

JWC:  There are some techniques for using buccal mucosa (the mucosa on the inside of the cheek) for various local flaps around the oral cavity.  If the fistulas were successfully closed, though, I am not sure what they were planning.

Joanne: It was declared closed.

JWC:  I wouldn't be sure then, because generally that area of the mouth is not operated on commonly because Stenson's duct (which drains the parotid gland) empties out just lateral to the first maxillary molar on each side and basically you can get obstruction of that duct with surgery in that area.

Joanne: Ok. I will pass your response on to the mom.

JWC:  Michael has just got the word out for apraxia services on the CLEFTSERVE email server. He puts a lot of time into that listserver.

Joanne: Wow, thank you so much. Most professionals basically run from my daughter, to be honest with you.

Joanne: I have another question from the list for Dr. K.

MikeK: OK

Joanne: One mom was concerned that many children begin speech therapy before they begin speech. Her son is three and nobody has mentioned speech therapy yet, though they say his speech is behind. When do you recommend that children with cleft begin to see a speech therapist regularly?

MikeK: That's a very complex question.

MikeK: I'm very sensitive to the normal variability in the rate of speech and language acquisition. So I don't usually recommend therapy for kids less than two years of age. But there are some exceptions.  There are some pre-speech activities important to speech development.

Joanne: Ok, related to that - my daughter, who is apraxic, as we've discussed, had some earlier issues. For instance, severe (almost morbid, actually) oral defensiveness that led to major feeding problems.

MikeK: If a child isn't doing reduplicative babbling ("bababa - gagaga") the sort of babbling that is made of consonant and vowel sounds, by about 18 months of age, its time to get a little nervous.

MikeK: Generally, we expect to see first words around age 12 months.  Normal kids usually start putting two words together in a meaningful way around 18 months. And by about 24 months, vocabulary skyrockets from about 50 words to several hundred, seemingly overnight.

MikeK: Joanne, sorry. I was so busy with my developmental speech I missed your oral defensiveness question.

Joanne: That's ok.

MikeK: Speech pathologists, occupational therapists, and others who specialize in kids can help with the oral defensiveness.

Joanne: It was unfortunate that ten years ago, my daughter (who was not adopted yet) did not have anything close to that available.. nor would anyone listen to me for the first two years after I adopted her. :(

Renee: Can I ask a small question?

Joanne: Yes, Renee.

Renee: Do all of the kids who had bilateral clefts sound nasal when they start to talk?

Joanne: Mine didn't Renee.

MikeK: Renee, no, they don't.  In fact only about 3 out of ten have that problem after they have the cleft repaired.

Renee: Yeah! Hope we're one of the lucky ones.

Joanne: Another speech related question that often comes up on the list.

Joanne: Many of our kids (disproportionately, it seems) have what can be described as "husky" voices... in fact, many of them are looked at for voice nodes.  Is this related to clefting?

MikeK: In a round about way. If a child with a cleft has severe hypernasal speech, (s)he may use glottal stops and laryngeal tension as a compensation strategy for ineffective oral speech.

Joanne: My son has no nasality, but he does have a short palate... his voice has always been husky.

MikeK: That leads to lots of trauma to the vocal folds, which can lead to nodules.

Joanne: BTW, Dr. K. I have three kids and all three have clefts, in case I confuse you.

MikeK: Well, the other thing to say is, many kids without clefts are hoarse.

* Christal raises her hand.

* JoanneG puts on her teacher whistle and calls on Christal's quiet hand

MikeK: Christal, go ahead.

Christal:  My daughter, 19mo uclp left side, has quite a distinct notch in her lip at the repair site, as well as her left nostril is a bit flat (more).

Christal: Our PS hasn't really mentioned anything about revision surgery anytime in early childhood.  Should I ask him about it, or is it normal to wait on these repairs?

MikeK: Dr. Canady?

JWC:  The scar at the closure site doesn't grow and stretch as much as the unoperated skin around it. As the face grows the tightness in the scar can cause some notching at closure.  The cartilage that supports the nasal tip on the cleft side is usually a different shape, size, and thickness as compared to the cartilage on the unaffected side.

JWC:  Some people feel (and I happen to agree) that lots of revisions early in life may not be a good thing for everyone because each procedure adds a bit more scar and can contribute to the ongoing problem.

Christal:  Another quick question, please.

JWC:  Generally the nasal asymmetry can be improved with cartilage grafting after the nose has achieved more of its growth. Ok, done.

Christal:  Our PS has also mentioned possible collagen treatments to fill in the notch later on...what is your experience with this method? Do you recommend it?  and does it work?

JWC:  There are several things that can be used to increase the volume of the lip and collagen is one. About 3 of 1000 people are allergic to the commercially available collage so most surgeons do a test injection in the arm or some other place. Collagen will also resorb.

Some people use fat that is obtained by liposuction and then injected into the deficient area. Some of this will resorb (it's individually variable) and this may need to be repeated, but some will usually stick around. Done.

Christal:  Thank you very much!

Joanne: I have another question tonight, you may as well hear about all three of my kids.

MikeK: Sure.

Joanne: My son, Jacob, is 13 and has been in retainers about a year now.. almost... before the retainers, his speech had a tiny bit of nasal quality, but easily overlook-able. His palate is short, but he pushed his air forward.

First, with the retainer, he had the "spit-speech" that is so common...but when that settled down, I became aware of a LOT of nasality if he didn't work HARD to push his air forward. (And to add to all of that, his voice is changing too!!). My question is - should I be doing more than just reminding him to push his air forward while in the retainers??? Can 
I hope that once the retainers are gone, his speech will become less nasal again?? 

MikeK: The retainer could be a "red-herring". It's possible that his adenoids (if he has any) are shrinking. If that's the case, and if his palate is short, the space between his nose and mouth (the velopharyngeal port) may be getting larger.

Joanne: He has all his throat goodies still.

MikeK: As that happens, he could become more nasal.

MikeK: If it gets to be more than you (or more importantly, he) would like to tolerate, its time to get it checked out.

Joanne: What might we be looking at, then?  It's not nasal enough to warrant another surgery.

MikeK: Thanks for the question. It comes down to how much it bothers him, you, and the people who listen to him when he talks.

Joanne: It doesn't really bother us. There are other speech issues of his I would prefer to be able to do something about. He stutters (mild) and he talks way too fast... THOSE are bigger problems.

MikeK: Right.  And ones that will take attention on his part to change.

Joanne: I have Kat's question ... Her son is very picky as far as what he will eat... She's concerned about that and wonders if you have any suggestions for getting him to try new foods?

MikeK: Ever notice how something you don't really care for tastes great when you're really hungry?  There's a clue there.

Renee: My husband has a question for related to our last question.

MikeK: OK, Renee.

Renee: He said does the Flap repair take care of the other 30% of kids who sound nasal?

MikeK: Dr. Canady and I could talk for quite awhile about this one. The short answer is, a surgical procedure of some sort can take care of most of the problems from the 30% who have hypernasal speech after the initial palate repair. Pharyngeal flap is the most common such surgery, but not the only one. We're moving toward reserving pharyngeal flap for the most severely affected kids.  And those who have good lateral pharyngeal wall movement. The others may be candidates for another procedure that is a little less likely to cause nasal airway difficulties.

JWC:  I agree with that and the other comment I would make is that you have to be careful with the term "normal" because if you listen to a range of people there will be some who sound more nasal than others. Mike and I try to focus on nasality that is compromising to daily interactions or concerning to the patient/parents.

JWC:  We think that an extensive pre-op workup including some way to visualize the closure mechanism (nasoendoscopy or video fluoroscopy) is important in deciding which operation is most appropriate for which patients. Mike's junior partner presented our results at the recent national Cleft Palate meeting and showed that it is possible to select patient for different operations and get good results. That is, however, not the same thing as saying everyone will be 100% "normal".

JWC:  I am not sure I believe that one procedure is vastly better than another, but I do believe that there are patients who are probably more suited to one type of  procedure over another, and if properly selected, risks can be reduced (but not entirely eliminated...). Done.

MikeK: Dr. Canady makes an important point here.  We're often looking for improvement.  Perfect speech is a pretty high goal for some.

Joanne: I have a related question. There is an alarming (to me, anyway) trend that I have been seeing lately for many teams to do a pharyngeal flap at age two.. without the benefit of ANY diagnostic tests, except for maybe the fact that the speech therapist suggested it.

JWC:  Let me comment and then Mike can.

Joanne: I really am concerned that I am seeing so much of this trend. The reason given to these families is so that "bad speech habits will not be learned".

Joanne: The rest of my question has to do with that explanation about "bad speech habits".. and that is that I have not seen that doing a flap later is any detriment to the efficacy of that procedure. Later flaps help as much or more than early ones, in my opinion.

JWC:  There are a lot of ways to do things and what we are presenting is only our way.  We both feel pretty strongly that while kids are developing speech (like Mike pointed out earlier) it is pretty hard to be absolutely certain what their speech patterns will end up being. We have seen kids who have nasal emission at 2 and kept that pattern and we have seen that change also as the kids have become more adept at the (actually very difficult) task of speech.

JWC:  So that is the reason we wait until they are older.  Also, at very young ages it is difficult to get cooperation with much pre surgical testing so it becomes difficult to sort out who should get a flap, a Z-plasty or a sphincter. Done.

MikeK: I think early pharyngeal flaps are almost always a bad idea. Particularly if there's no physical testing to support it. The risks of reduced nasal airway associated with pharyngeal flap are not worth the potential gains. That being said, I'm all for trying to improve speech as soon as possible. Speech therapy often plays an important role between the ages of 2 and 4 or 5.

Kristi:  I would like to ask a question.

Kristi:  My son who is 3-1/2 just had the flap surgery done over a week ago, doctors say everything looks great. How long does it take to see an improvement in speech?

MikeK: Speech therapy is needed now. Because a flap has been performed doesn't mean that your son will automatically change the motor patterns for speech he has been working on so hard to develop all his life.  He needs help doing that.

Kristi:  I seem to be getting the run around with the speech, I have been trying to go through the school for speech services for approx 6 months now with no luck, any suggestions?

MikeK: Kristi, did I answer your question?

Kristi:  I think so, he has developed major substitutions to try and make the sounds so I know it will take some time, I guess the worst part is knowing if you are doing the right thing. Thanks.

MikeK: Yes, it's hard to be patient.

JWC:  Kristi, there is a lot of swelling if the flap is only a week old and there may be some pain so it is not unreasonable to let that heal up a bit and then get going with the therapy as Mike has suggested.

Becky:  My son is 3 1/2 with PRS and I have question about the above reference. His name is Joey and I was told that he will need a second surgery for the soft palate closure and I need to know about it.  They said there are two ways to go about it and I need to know what will happen and what effect it will have on him.

JWC:  Sometimes with very wide cleft palates, some surgeons will do them in stages to try to reduce the chances of fistula formation. I can't really say what the "two ways" are, but that would be a good question for your surgeon.

Becky: Also what will happen if we decide not to do anything. We understand him quite well and he has been in speech since the first cleft palate surgery at 10 months.

Becky:  They told me they could either take a piece of the rib cartridge or they could bring the back part of his throat and sew it to his nasal area.

JWC:  Again, that is difficult to answer without actually seeing him. Generally it is best to try to get the palate closed as soon as the situation will permit.

JWC:  It sounds like you should make an appointment with your surgeon and get some more information on exactly what he/she is planning.

MikeK: Hey everyone. I've got to go. It's been fun talking with everyone. Hope it was helpful.  Maybe we can do it again sometime.  Joanne, hope to see you in Iowa City soon.

Joanne: Thank you, Dr. K. Yes, I look forward to meeting you there.

JWC:  How about one more question for me Joanne? Maybe two.

Joanne: Ok.. Cindy has a question.

Cindy: Hi Dr. C and Dr. K.  It's great to have you here. I'm Cindy and my question is regarding my 10 year old.  She had a pharyngeal flap at age 5. She now has obstruction sleep apnea and we'd like to help this out without taking away from the wonderful speech patterns she has now. Is there anyway to do this? It's not severe enough for cpap. Our PS really doesn't want to even take down part of the flap either.

JWC:  Without seeing the sleep study it is hard to say for sure, but CPAP can be used on a wide variety of situations. There are also some studies in the literature where flaps have been taken down and the speech didn't seem to change that much.  I don't have much personal experience with that. Done.

Cindy:  I guess I'll have to do some more talking to our PS, but thank you for your comments. They did help. :-)

Joanne:  Becky has another question right now for you, Dr. C.

Becky:  My son Joey had a nissen fundoplication done when he was three months Now is always telling me that his belly hurts. Sometimes he coughs so hard because of sinuses that small amount of blood comes up. Is the nissen coming apart? That Dr. didn't want to perform the procedure on him because he was small, but didn't have a choice. Can the stitches rip and come apart?

JWC:  It is hard to say and again, that is really a specific question that your surgeon would have to address with some additional diagnostic maneuvers.

Becky:  He also had a hernia fix with the nissen could that be giving him problems.

JWC:  That is not a procedure that I do so I would not be able to give you specifics on that. How about one more question?

Renee:  If nobody else has one, I have one.

Joanne:  Go ahead, Renee.

Renee:  My son is getting his palate repaired in July at 11-1/2 months old. He just had his lip and one side of his nose closed in March at age of 7 months. Anyway our PS said he is going to close the palate and he "might" lengthen the columella. My question is I think his nose looks real good now. Would it be better to wait to lengthen the columella later and let it grow on it's own?

JWC:  It really depends on what it looks like and what your surgeon's overall plan is.  I personally am a believer that less surgery early on introduces less scarring and has the potential to cause less secondary problems later on. Not everyone agrees with that. You should have him explain what he sees as the pros and cons of adjusting the columella at this age.

JWC:  OK, one more question and then I really have to go.

Joanne:  Jenners has a question now concerning her son's recent palate repair.

Jenners: Thanks, Joanne. Hi Dr. C. Really great to have you here. My son had his palate repaired last month at 7 1/2 months old. We looked in his mouth yesterday, and he now has a long hole down the right side of his palate and a big hole on the left side behind the gumline. We haven't been back to the PS yet for his post-op checkup.

JWC:  Is food coming out his nose?

Jenners: Yes and no.

JWC:  I don't know what that means.

Jenners: He's been very good about not letting it come out - unless he sneezes. At what age should he need to have the repair repaired again? Should we wait 6 months, or would we do better to wait even longer? It is open to the nasal passage, I can see that much.

JWC:  He may not have to have that done again. Without seeing him it is hard to say, but what you are seeing might be where the tissue flaps were moved from inside the teeth toward the midline.

JWC:  If it is open, then he will need to have something done. Typically I would wait at least 4 months and maybe longer depending on what it looks like. The reason is to give it time to soften. All these things would be very reasonable to discuss with your surgeon, though. Done.

Jenners: Okay. Thank you very much!

Joanne:  Well, I want to thank you very much, Dr. C, for being here and listening to and answering our questions.

JWC:  You're welcome. Good night everybody. Thanks for coming.

Joanne:  And please pass our thanks on to Dr. K too.

JWC:  I'll do it...good night.

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